What did we learn from ILC in 2022?

Reflections from those who attended

What did we learn from ILC in 2022?

The 21st International Leprosy Congress took place in Hyderabad, India in November 2022. We have asked some of those who attended to share their reflections on what they took away from the Congress.

What inspires me at the ILC is the interchange between people that share a collective drive to reach zero leprosy, and to make a positive difference in the lives of persons affected by leprosy today. Leprosy is a challenging disease, and for that reason I think that all of us need to have our own commitment ‘recharged’ from time to time. Meeting together with like-minded people is a great way of doing that, whether in the learning environment or in the socialising, meal-times and other gaps in the programme. Thanks to the International Leprosy Association for bringing is this event!

Geoff Warne, CEO of ILEP

According to Manly Hall, words are potent weapons for all causes, good or bad. The phrase ‘leprosy elimination’ continues to be controversial and confusing. Previously defined as achieving Less than one leprosy case per 10,000 population. It was assumed that leprosy would no longer be a public health problem once achieved. Evidence has since shown otherwise.

Given this, the phrase has been redefined as Interruption of leprosy transmission, by WHO. A key take home from the 2022 ILC is the critical need for practitioners to discontinue the use of the phrase ‘leprosy elimination’ because it is misleading.

Dr Sunday Udo, National Director of TLM Nigeria

Despite the fact that leprosy is a neglected tropical disease, the ILC shows that leprosy has a voice on a global scale. It is quite reassuring to note that, from a medical standpoint, several nations and organizations are attempting to eradicate leprosy by implementing SDR-PEP and putting great effort towards discovering a vaccine for the disease.

Jiptha Boiragee, TLM Bangladesh

ILC gave us a very important message that scientists and researchers are consistently working in the discovery of more effective measures to defeat leprosy. We are hopeful there will be a vaccine soon in the future, and we will ensure that all the stigma and discrimination come to an end with the end of the disease.

Such forums give the people with lived experience opportunities to share their experiences that help us foster leaders in the field of leprosy.

Amar Timalsina, IDEA International

Since new drugs for leprosy arise infrequently, exciting new treatment possibilities were highlights of the 21st ILC. The first human trial of the bactericidal agent Bedaquiline showed great promise, with killing of M. leprae confirmed by molecular viability testing. New information was presented regarding the anti-inflammatory mechanisms of CC-11050 for ENL. Further clinical trials of these drugs are expected soon.

Diana Lockwood presented a strong case for the need to conduct robust clinical trials to develop a new MDT regimen — more potent, shorter, and with fewer side effects. Nearly 75 years after the first cure with sulfones was announced at the 5th ILC in Havana, treatment has come a long way.

Dr David Scollard, Director (retired) US National Hansen’s Disease Program

Hosting ILC in India ( the country with the highest global burden of leprosy), offered the most exciting possibility of many people affected by leprosy participating in the conference.

The congress also offered participants an opportunity to engage with communities who are most affected and opened their minds to some of the realities that they face. For us at TLMTI, we had the opportunity to host a first ever workshop for champions during ILC as a side event in the same venue.

Two of the sessions that stood our to me were Alice Cruz's reflection on the remaining challenges regarding stigma and discrimination and the Novartis Symposium, which reflected on the potential of using AI for rapid screening and diagnosis of leprosy.

Nikita Sarah, TLM India

This kind of event gives us new ideas and motivation to work in the field of leprosy. From a mental health perspective, there were many papers presented at ILC. It was really exciting. In the previous ILCs, there weren’t many papers related to mental health and leprosy. The participants are also more concerned and interested in the field of leprosy related to mental health research. Leprosy related mental health should be the main priority in future.

Ruth Shrestha, TLM Nepal

As a country leader supporting projects of our TLM partners in the field I was interested to update myself on general developments in leprosy research and on more specific research projects to support.

Our priority area is stopping leprosy transmission. Most presentations were too short, but the informal side meetings were very worthwhile.

My takeaway from ILC 2022 were:

Strong collective effort towards Zero leprosy and substantial growth in leprosy research investments
Interesting development in new antibiotics for leprosy treatment and treatment of leprosy reactions
Potential contributors to leprosy transmission, like Helminth infections.

Henno Couprie, Country Leader of TLM Netherlands

It was an honour to attend my second ILC alongside key actors across so many fields within leprosy. I’ve come away with three takeaways. First, early detection remains our biggest and most pressing challenge. Second, we need to be implementing workable systems for following up cases to prevent disabilities. Finally, we have to make use of leprosy champions in our case detection efforts.

Beletshachew Tadesse, Country Leader TLM Ethiopia

One of GPZL's most significant contributions to ILC was our research funding plenary, co-hosted with LRI, which shared data about leprosy organizations' funding contributions to leprosy research in the last five years. GPZL strives to bring together leprosy entities to collaborate and work together more effectively, and that's what we sought to achieve with the plenary, by increasing transparency around leprosy research funding.

Andie Tucker, Global Partnership for Zero Leprosy

One of the stand out presentations for us looked at a change to the leprosy treatment regimen. Clofazimine and Dapsone have side effects that discourage patients from completing their full treatment. We hope that Rifampicin, Ofloxacin and Minocycline could prove a viable alternative in time so that patients don't face such severe side effects and we can mitigate against the risk of drug resistance.

Sian, Bahadir, Natalie from TLM England & Wales

Two things stood out to me. The first was the discussion around the term ‘leprosy affected’, which might be adding to the stigma around leprosy. Perhaps we should not be using the term because it could be having an impact on the mental health of former patients long after they've finished treatment for their physical ailments.

The second thing that stood out was the presentation on the Temporalis Muscle Transfer for Paralytic Lagophthalmos Reconstruction. The procedure carried out for Lagophthalmus is an elective one, but it has been seen to have an effect on the person's morale and self-stigma as it is a very visible deformity. The work by Anandaban Hospital is a real stand out in this area.

Dr Jemish Acharya, TLM Nepal

Overall, ILC was very encouraging. Dr Diana Lockwood presented on the need for a new treatment regimen for leprosy, given the many people who experience side effects. This highlighted this particular need for me and it was good to hear of several new drugs, notably bedaquiline (Janssen, Belgium), showing great promise in pilot studies.

There were a few other details, like the substantial number of studies on the mental wellbeing of persons affected, most of which showed very similar results: a large proportion (up to 50%) of those affected also show signs of depression and anxiety. Fortunately, there are promising interventions, such as peer support. This has been shown to be effective using the Basic Psychological Support for persons affected by NTDs (BPS-N) approach in India and the mental motivators approach in Bangladesh.

The Institute for Tropical Medicine in Antwerp presented several interesting results from the PEOPLE trial in the Comoros, including a significantly increased risk of leprosy among contacts living up to 75 metres around an index case, but not beyond. They also showed how hi-tech genetic approaches can detect drug resistance, but also the distribution of different types of M. leprae in an area and even estimate the burden of infection in a community.

Dr Wim van Brakel, NLR International

The ILC-2022 was a much-needed and very well-organised event in hybrid mode at Hyderabad, India. The added value of in-person participation was also palpable where various stakeholders (researchers, clinicians, policy-makers, funders, industry participants, patients and other contributing players) of leprosy control efforts were able to effectively interact with each other.

This gathering successfully facilitated improved understanding of the current priorities, the progress made so far, the remaining challenges, and the possible ways forward to attain the target of "Zero-leprosy" one day. Continued commitment and focus are required to finish the ‘Unfinished Business' and the so-called ‘last mile’ of leprosy control.

Professor Pushpendra Singh, National Institute of Research in Tribal Health, Jabalpur, India

As a clinical researcher in leprosy, I really appreciated joining colleagues from all over the world at ILC 2022 in Hyderabad. Learning about new advances in the field and the problems people encounter is always a trigger for new research ideas: a better treatment regimen for leprosy, better case finding and stigma reduction interventions, new surgical techniques in managing disabilities. Research funding availability talks were useful and the use of artificial intelligence (AI) in facilitating training, case detection, case management was inspiring.

Dr Saba Lambert, ALERT Ethiopia and LSHTM UK